I have severe Scoloisis of the spine, that being on a 45degrees angle.

i was diagnosed at the age of 18 years old, and now just on 40.

i have always had severe back pain and this has been very difficult to manage over the year.

I was advise by my Dr to excersice and lose weight, as i was classified obese.

I became depressed due to my situation and was prescribed antidepressants and panadine forte, this helped for a while but i managed to get out of my depression after 4 years and re-located to a coastal town and was trying to stay positive, but the pain was very difficult to manage, and panadine forte was tryed, also tramadol for a while also endep, but just couldnt get the pain managment right, i lost 30 kilos and became active in physical excersice under the direction of my doctor and personal trainer, so a modified progrmame was set up for me. This assisted, but the pain was still very strong at times and caused me to break down in tears.

I spoke with my dr about Norspan patches, but he was very reluctant to give them to me, he advised me that they will cause dependancy, withdrawals and said that as time goes on you will need more and more , higer doses, and stronger meds.

My dr was concerened as he said he felt he had a responsability not to turn me into an addict, as he advise me that Heroin addicts use it when they come ofthe drugs

I thought about this over a couple of weeks but the pain is so severe i went back and explained to him firmly that i cannot keep taking 3 panadine forte every 3 hours, sometimes i needed to take the next does on 2 hours apart, i have been taking panadine forete for the last 7 years, and yes it had a place for pain managment then, but it is no longer effective and i cannot cope with the pain any longer, i cry and break down most days and try to hold myself together in front of my small children, as i dont want them to see me this way as it upsets them naturaly, so i find a space within my home to lay down rest and bear the pain.

My Dr prescibed Norspan 10mg patches, but was not happy in doing so, but in the end respected my desicion.

I have had the patch for 24 hous only, they say it takes 3 days to become effective?

Can i use panadine forte in conjunction with the norspan patch?

I take medication to sleep called stillnox - i forgot to ask if this was safe to use with Norspan ?

I have come to the concusion that the quality of life is so important, and rather a quality life pain free so i can cope with day to day tasks, play with my kids ,and lead a happy pain free life, as much as i do not like taking the meds and this was a difficult desicion, but the pain is so overwhelming that it destroys my life, leaving me in severve pain, depression,guilt etc...

i hope this patch works for me and sooner better than later

I would like to hear others thoughts on quality of life-pain managment

Hello Punch and welcome to the forum! I saw that you posted a question to Boxer, and thought I would let you know she is gone for the weekend. I'm sure someone else will be along to help you with your questions. Sorry, I can't be of help, but wanted to welcome you here. You will love it here!

I had to add little more here...WOW!....I read your full post, and you are having a very rough time arnt you! hang in there, as there will be someone here who is better suited than I'am to answer your questions. I understand the loss of quality of life that you are talking about. If your Dr can get the meds adjusted right for you, it helps a bunch with that very thing. Check here often and please keep us updated on your progress.

Hi, Punchfit,Welcome to the Chronic Pain forum of Healing Well. I can see from your post, sadly, that you are no newcomber to pain.

I would first say that this is the greatest place on the web (IMHO) for support and to share experiences, but we're not doctors and can't give medical advice, so as far as what's safe to take with which medication, I think you need to call your doctor's office or your pharmacist (pharmacists can be a great source of info,) and ask. You don't want to overdo it with medication, but then again you're entitled to good pain management - well, we all are IMHO but it's not easy to find.

Is your doctor a pain management specialist? Because I would suggest seeing one if he's not - and if it was me even if he was a pain management specialist, his attitude about helping you achieve a quality of life is lousy. Please go to the Chronic Pain 101 post (the first post at the top of the page) and read a few thing - especially in the area of identifying dependence from addiction. We all become dependent on a variety of medications, which is something that will happen with the body. There's a lot of misinformation out there, even among many doctors, about the difference between dependence and addiction. They are NOT the same. There's a link to an article in the CP101 thread that you could even print out and take to your doctor, as it's written by a combination of pain management and addiction specialists. Whether or not someone develops tolerance (needs increasing amounts of medication over time to achieve the same effect) is an individual thing. It doesn't happen with everyone, but again tolerance in itself is not addiction.

You've gone so long without decent pain management and I think you deserve better. I don't know what your options are in Australia. We here often have a hard time finding decent pain management, so you're not alone. But please also remember that even the best pain management doesn't get rid of all the pain (sadly); but it can help improve quality of life drastically!

I am anxoius about the whole meds stuff, the difficulty is that the more i goole and read them more afraid i become of some of the pain managment medications, i feel somewhat torn as i cannot deal with the pain, and cannot keep living in the pain that i am experiencing, and really do wantt some quality back into my life.

The problem is alot of info on the net regarding meds are a worry, i suppose i need to focus on getting the info from the appropriate source, my Dr.

It never crossed my mind to specifically see a specialist, I will speak with my doctor and ask to be refered , it make sence as obvoiusly the doctor can give me options , advise and have a greater knowledge of pain managment than my regular Dr.

I agree with you , my Doctors outlook on pain managment was not positive,he was more interested in trying to keep me taking Panadine Forte (Codeine) and advised that i should just try and deal with it, as pain managment meds have repucusions done the track and said i will eventually need higer doses, but i am glad you pointed out there is a difference from addiction & dependance something i should discuss with my gp, he said advised he had a sence of responsibility and advised me that he has been in this situation before with other patients and addiction is his greatest concern. What about the responsibility to assist me as a patient with chronic pain? I think i probally needed to speak about what other pain meds might be suitable and what options i have as we did not discuss other meds other than Norspan, and this was because i was advised by my prevoius dr to consider them, but unfortunatley she moved on and left the clinic, so i actually suggested the Norspan.

Thankyou for all your advise and support, i will seek a specialist and see how i go, but in the mean time until i get these meds right i am desperate for some pain managment in the interim, and am hoping the Norspan will reduce/elivate some of this chronic pain.

Also i am sheduled for x-rays next week to see if my spine has shifted or if the is any other damage to discs etc... My last lot of x-rays were 6 years ago, and my pain has increased dramatically. maybe it gets worst with age? who knows.

I'm not from Australia, but isnt Norspan patch's main ingredient Buprenorphine?? I know they use Buprenorphine in pill forms (I know in america it's called Suboxone/Subutex but I dont know if i has the same name there) but from my understanding, when they made it in patch form, it was approved for chronic pain. I know they're doing clinical trials in the US right now for those to be used on chronic pain. So basially what I'm getting at is, isnt the buprenorphine patches approved for pain where your at? or are they approved for opiate dependence? or both? Because I thought it was just approved for pain so I dont understand why your doctor is bringing up the fact that they're used for people hooked to heroin.

It sounds like your doctor just isnt comfortable getting to know anything about pain and is stuck in his ways. I would look into finding another doctor that knows about pain manegment like others here adviced. Because what is gonna happen if the patches dont gree with you or you need a higher dosage?? this doctor is prolly just gonna tell you too bad from the sounds of it. Well anyways, I hope it does help you. And I dont know much about mixing other meds with that med. I take SUboxone, which is Buprenorphine for my chronic pain and I know it can be deadly if mixed with the wrong meds, so be very careful and ask your pharmacist or doctor before taking anything with it, PLEASE do, Buprenorphine is a VERY stong narcotic and shouldnt be taken lightly, be very careful.

Yes its approved for Chronic Pain & opiate dependance, my doctor said that besides using it for Chronic Pain Managment, they prescibe it to people who are trying to get off Heroin.

Spot on, i was just thinking about that today, what if this doesnt work for me or i need a higher dose or different med, if my doctor was very reluctant to prescibe Norspan, he will probally be unsuportive in assisting me with the appropriate meds i require. I have had enough of putting up with the pain, and most likey need to see a different dr, im hoping though he will be a little open minded and supportive, if not i will move on, but i do agree that i really need to see a specialist in pain managment to get on track and minamise this pain. My Dr is aware of the other meds i am taking, Codeine(Panadine Forte) and Stillnox for sleep, as he prescibed them, so i am assuming he would have advised me otherwise, but will call the pharmacy to double check.

How effective has this medication-Suboxone been for you to manage your chronic pain?

Punchfit,Sad to say, but I wouldn't assume your doctor has a lot of knowledge of pain medications, what can be taken with what, etc. He seems far more focused on misinformed views about addiction. So I'd do like Kitty suggested and ask your pharmacist. And continue seeking a pain management specialist ASAP. One thing - here in the States many pain management doctors have gone to only doing high tech interventional procedures - a lot of injections and the like. Now those can be very helpful for some, but what you want to try to find is a pain management doctor who will also prescribe you medications. A lot of them here are avoiding that piece, so we,too, have a hard time finding good PM from doctors.

And do be careful of where you seek information on medications and such. The best are credible sources like webmd, the fda (course that's a U.S. government agency), and there are others, but I'd be leary of what you read on forums (even this one, as good as it is !) about medications because everyone reacts differently. There are some good resources listed in the first thread CP101, as I mentioned.

Good evening. My name is Dani. It is a pleasure to meet you. I am very glad you found the Healing Well Community. I do hope you decided to stay and give us a chance tog et to know you better.

I know nothing of the "patches" or any type of "patches", but I am sure other will know and will be able to share their experiences with you. I hope that they provide you with the relief you need.

You mentioned you have a Scoliosis and it began in early childhood. Do you know if you are Idiopathic? Still progressing? If so, are you a candidate for surgery yett? 40+ here in US usually puts you in to possible candidate catagory, due to risk of organs not having enough space to function. Though I have heard some hospitals wont consider till you are 50+. What I do know, however, is that the surgical methods for straightning scoli curves are very advanced these days.

In anycase, before I chat endlessly.. I just wanted to say "Welcome!" and again, it is very nice to meet you.

*huggs*

dani

Two roads diverged in a yellow wood,And sorry I could not travel bothAnd be one traveler, long I stood

I dont know much about pain managment and what is available here in Australaia, this all so new to me but i need to learn as much as possible and know my options , because I cannot cope with the pain as you are all aware of how chronic pain effects our daily living, its a nightmare at the moment.

I am not familiar with pain managment injections or what is used etc... I bascially only have the knowlege of the meds i have taken in the past (Codeine, Tramadol and endep ), which were relativley effective until fairly recently. I have been putting up with the pain as much as possible but it has become worse to the point of unbearable and constant, some days better than others but most days quite severe.

What is facet injections ? i must sound so naive and uneducated (lol)

My husband said the same that i read to much, and require credible sources, as i have become anxoius after reading so many conflicting stories and information. Thankyou for the info regarding some website i can visit, much appreciated.

Do you know the reason as to why the PM Drs in the States are avoiding the medication issue?

I am intrested to know more about facet injections? can you shed some information on this, im glad this has helped you.

i have never been sugessted injections as yet . How long does this give you relief for? do you have to have the injections daily or weekly?.

You mention below fusion is this surgery?.

Is gives me some calmness in being able to relate to the stories on this forum in one way or another, i dont feel alone so to speak as I feel isolated at times as i really only have family to talk to about this all, and i dont want to bother them.I know my family would be cross at me for thinking this way, as they are very supportive and loving and always there for me but because this is chronic pain, i feel like i am complaining all the time. So its great to get on the forum and speak with you all and share info, stories and support.

Hope you are keeping well, and sounds like your PM quite effective which is important.

I am here to stay and i am so glad i did find the forum and find you all, its lifted my spirits as i am so anxoius and aphrehensive, i need to slow down and take one thing at a time as i junp to conclusions and that being the worst for some silly reason.

The norpan patches are not available yet in the states but i believe its not to far away,Buprenorphine

Is the main ingreidant, there are 5, 10 & 20 mg patches the pain relief is supposed to last for 7 days then a new patch applied to the skin,i have only had the patch on since Friday and at 10 mg, they say it takes 3 days to become effective , i am praying that this is the case as my pain is chronic and sometimes is just bearable and other times i am in extreme pain.

I would love to hear from anyone willing to talk about how they cope with chronic pain? including meds, theraphy,cold compress, heat packs ointments etc... or anything else that has been effective in reducing pain.

When you say Idiopathic do you mean degenerative?- Information i have is that degenerative scoliosis occures around 40 years of age, My curve has only moved slightly since my first lot of x-rays when i was 18 or 19. i had another lot of x-rays at the age of 22 years of age. I am sheduled this week to have the next set of x-rays (now at 41 YRS of age ) to see if the curve has moved any further or stayed the same, my fingers are crossed that it hasnt curved anymore x.

i am not sure on the thoughts of surgery required by adults with moderate to severe scoloisis, i am aware that it used to be rectified on younger children before reaching late teens

.My cousin had surgery at the age of 12 years old, placed two metal rods between the spine to assist it to grow in the correct manner, years later they removed the rods and she now has a straight spine and lives an active pain free life, you wouldnt even know she had it, if you were not told. i dont now how they go in surgery for adults, i am being refered to a orthpeadic surgeon, for his option and will discuss the risks, and find out what percentage of this surgury has been succesful.

I am going to request a MRI and a CT to check for nerve and spinal cord damage and disc damage, apparently you can have a nerve test. My pain has increased and is intensified dramatically, and apparently this is a symptom of degenerative damage along with a list of others, i experience thorasic pain, severe shoulder and neck pain, and tingling warm numbness pain in the lower back.

Does anyone here sufferer lower back pain with numbness and tingling hot pain? Should i apply hot or cold paks? i would like to hear if any of this has assisted others for a little relief.

Thankyou once again for your warm welcome, and nice to meet you too. hoping you are feeling pain free as possible.

Punchfit,I think if you follow along with us for awhile you're going to see that many of us struggling with answering some of the same questions you ask. You're right that it helps immensely to have others to talk with who not only experience CP, but have been through a lot of procedures, medications, etc. It is important to remember, though, we're not doctors, and everyone's reaction is different so you still need to take things - especially responses to medication - as opinion and not fact.

Compared to many forums, this is great because of how it's moderated, and the forum rules kind of keep us coloring in the lines, so to speak! LOL But it is still a forum.

I know I never had low back pain until I took a bad fall back in 2004 (Nov. 5, 2004 - funny a date can change our lives). I tore the ACL in my left knee and within a couple of months started having back pain, pain down my right leg, and slowly developed numbness and tingling in both feet. I still have those symptoms after lots of Physical Therapy (PT), numerous injections - which often contain steroids with the hope of calming the pain for at least a few months, and finally, a double lumbar fusion. I had a lot of PT after my surgery, but still, the symptoms never improved. Sometimes nerves that are compressed or injured for too long don't heal. What I have learned is the spine and nerves are complex and challenging parts of the body!

I did a lot of studying on websites usually associated with major medical centers like the Cleveland Clinic, etc. to learn a lot about anatomy - although I am still a novice. I think the website Cleveland Clinic contributes to was www.spineuniverse.com. I'm not sure if it's ok to put that in the post, but I don't think they have a forum there that competes with HW and I have no monetary connection with them (check the forum rules to know what I'm talking about!). But they were a very user friendly site for a lay person, giving a lot of diagrams of the spine, and so I was able to understand what "facet joints" look like, etc. They're a part of the spinal structure. Injections can be given into a variety of places in the spine; the facet joints are one part. I had facet joint injections before my surgery for diagnostic purposes - which means they givev you some medication and if it stops the pain then they've managed to find the right site. Doctors thought maybe because there was so much arthritis in the facet joints that they could be causing the problem, but the injections didn't help, so they weren't.

I don't know much about the complications with adult scoliosis but Dani seems to know more, and again, I'd suggest you go to the websites of some of the major medical centers (not sure what they might be in Australia, but you can still get info. from websites in the states) and read, read, read! I also went to a site www.medscape.com which is affiliated with a site doctors use to get their journal information, www.medline.com. Medscape is free, and has more articles oriented for us lay folk, but you can access some of the journal articles (same things the doctors read) searching Medline. Sometimes you have to be a member to get certain info. from Medline, and there's a fee for that. I can't tell you how many articles I printed out on lumbar fusion surgery before I had mine! But there were sections that were over my head - but it at least gave me some info, and some things to ask my doctor. It can also give you an idea if you search the site about treatments for adult scoliosis. I'm sure each case would be different.

Ok, I've gone on long enough. Hope some of this helps! And don't forget to search the old threads of Healing Well. There's a lot of good information in them, but again much of it is our experiences and opinions.

Hi Punchfit, I too would like to welcome you to HW although I am a little late in doing so. I am so glad you found us but very sorry to see another person come along with CP. From reading your post you have had more than our fair share of suffering, a lot of it it needlessly, that's so sad. You were terribly young to start down this road. Under treated pain should be made a criminal offense because its just rampant.

No dr should ever question a patient when the patient is simply stating "I want some quality life". If it was only that easy. I was glad to see that you did advocate for care from your dr. Many of us are having to do this more and more. You are entitled to that.

As some has said you should try to find a pain mgt dr to handle your pain. You have not and most likely in the future will not receive the kind of pain mgt care you will need as time goes on with the dr you have now. Your dr is too concerned with issues down the road and not concerned with taking care of the immediate problem. You need to be able to function and take care of your family. CP takes a lot away from us but there are ways to keep some aspects of our life intact.

Drug addiction in the US makes it hard for many of us to get good medical care. The drug seekers has really ruined for us that need certain medications to function. No one likes to take medication but sometimes it is a way to survive. There is a big, big difference between addiction and tolerance issues. We can become tolerant to our pain medications just like we can become tolerant to diabetes medicine, blood pressure medication, antibiotics and such. Sometimes we may need higher doses or even need to change to something totally different. Many do not understand this, they choose to stick their heads in the sand. The best thing you can do is educate yourself on CP and the medications used to treat it. It can be scarey but all medications have possible side effects, but it does not mean it will happen to you.

You had asked about using heat or cold methods. That is something to try for yourself to see which one works the best. For me heat works best, cold makes it worse. Moist heat is much better than dry heat too. Take care and please keep posting, I think you found out you are not alone.

Good evening *hugg* it is good to hear from you again. I hope you are able to rest a little bit tonight. I hope your MRI shows it hasnt increased too drastically. More than that I hope you and your doctor can find a way to effectivly treat your pain.

I have levoscoliosis of unknown origin. (so far) It began a few years ago at age 26 - 27. They seem concerned that it started "late in life". about a year ago at age 28 I began showing degenerative changes to my spine (other areas of my body aswell)

and already progressing curve. Its hard to acknowlage that I am only 5ft 5in now, when I used to be nearly 5ft 9in just a few years ago, yikes!!! I am not a candidate for surgery... any type of surgery for that matter, that isnt of urgent need to my health, until they can find a "cause (s)" of my health problems.

I used to be part of scoliosis association forum, but it seemed there was constant "fighting" over the bracing vs. surgery debate. Also, there went nealry as many people over there as there is here. Once I came here to Healing Well, I never looked back! Hehe

Oh! Before I forget, yes!!! I get the "hot pain". It feels like extreme "sting" sensation with loss of feeling / numb in the limbs?? If so, they allow me to have "steroid injection series" to realieve that pain and inflammation. It is a temporary fix, but the only one I have available to me right now. Perhaps you might want to inquire about it.

And to answer you question about "coping" ...I began to cope with it all by "re defining" me. I saw a pain psychologist for a very long time. She taught me the mechanics of pain to ~~> Cognative behavioural therapy ~~> Biofeedback. I wouldnt be the "me" I am today without her help.

Sorry the post is so long I have a habbit of getting a little too chatty! Hope you have a great evening

*huggs*

dani

Two roads diverged in a yellow wood,And sorry I could not travel bothAnd be one traveler, long I stood

PAlady said...Punchfit,I think if you follow along with us for awhile you're going to see that many of us struggling with answering some of the same questions you ask. You're right that it helps immensely to have others to talk with who not only experience CP, but have been through a lot of procedures, medications, etc. It is important to remember, though, we're not doctors, and everyone's reaction is different so you still need to take things - especially responses to medication - as opinion and not fact.

Compared to many forums, this is great because of how it's moderated, and the forum rules kind of keep us coloring in the lines, so to speak! LOL But it is still a forum.

I know I never had low back pain until I took a bad fall back in 2004 (Nov. 5, 2004 - funny a date can change our lives). I tore the ACL in my left knee and within a couple of months started having back pain, pain down my right leg, and slowly developed numbness and tingling in both feet. I still have those symptoms after lots of Physical Therapy (PT), numerous injections - which often contain steroids with the hope of calming the pain for at least a few months, and finally, a double lumbar fusion. I had a lot of PT after my surgery, but still, the symptoms never improved. Sometimes nerves that are compressed or injured for too long don't heal. What I have learned is the spine and nerves are complex and challenging parts of the body!

I did a lot of studying on websites usually associated with major medical centers like the Cleveland Clinic, etc. to learn a lot about anatomy - although I am still a novice. I think the website Cleveland Clinic contributes to was www.spineuniverse.com. I'm not sure if it's ok to put that in the post, but I don't think they have a forum there that competes with HW and I have no monetary connection with them (check the forum rules to know what I'm talking about!). But they were a very user friendly site for a lay person, giving a lot of diagrams of the spine, and so I was able to understand what "facet joints" look like, etc. They're a part of the spinal structure. Injections can be given into a variety of places in the spine; the facet joints are one part. I had facet joint injections before my surgery for diagnostic purposes - which means they givev you some medication and if it stops the pain then they've managed to find the right site. Doctors thought maybe because there was so much arthritis in the facet joints that they could be causing the problem, but the injections didn't help, so they weren't.

I don't know much about the complications with adult scoliosis but Dani seems to know more, and again, I'd suggest you go to the websites of some of the major medical centers (not sure what they might be in Australia, but you can still get info. from websites in the states) and read, read, read! I also went to a site www.medscape.com which is affiliated with a site doctors use to get their journal information, www.medline.com. Medscape is free, and has more articles oriented for us lay folk, but you can access some of the journal articles (same things the doctors read) searching Medline. Sometimes you have to be a member to get certain info. from Medline, and there's a fee for that. I can't tell you how many articles I printed out on lumbar fusion surgery before I had mine! But there were sections that were over my head - but it at least gave me some info, and some things to ask my doctor. It can also give you an idea if you search the site about treatments for adult scoliosis. I'm sure each case would be different.

Ok, I've gone on long enough. Hope some of this helps! And don't forget to search the old threads of Healing Well. There's a lot of good information in them, but again much of it is our experiences and opinions.

PaLady

PAlady, hope all is well.

Yes indeed i have been exploring this site and cannot stop reading when i am not in to much pain to sit at the computer, the experiences and peoples stories, info etc... are incredible , there is alot of inspiration , support and caring people here which is just wonderful. Its amazing how positive you all are, and this has been a huge benifit sharing stories with you all even in this short period of time. Its also great to hear what people are using for PM , other than meds, compress heat packs etc... it all helps and i need to experiement with some of the info i have read in the forum, as i said.. it all helps.

Thankyou for your info in relation to rescources/'other websites, your time writing to me, is very much appreciated.

I will check them out, sounds like you have really educated yourself, there has been some very valuable info on some of the old threads.

I am so sorry to hear what you have been through, it must be very dissapointing that your symptoms never really improved after surgery,at least the injections and PT can give some relief, I hope this PM is adequete for you, i have spoken with someone on another forum and they told me that the problem with most pain managment is that its short lived, doesnt provide long enough relief, but that is there experience.

They use the steroid injections here for mostly sports related injuries, or tendernitice etc... i have not explored this option as yet , but will do so with the specialist. Does or has these injections caused weight gain to you? if you dont mind me asking. i need to keep my weight down to eleviate pressure of my back and internal organs heart, ribs etc..., i managed to lose 30 kilos, but personally i feel that this has not really eliviated my pain, but i do feel much healthier and comfortable , if that makes sense.

Your experiences and opinions have been just wonderful, i do hope you are in good spirits.

Punchfit,Thank you for your kind words. Unfortunately, the injections never helped me much either, but I've not heard of weight gain from them. But various medications can cause weight gain, but not all. I know I've gained about 20 lbs. since my surgery and I had worked to take and keep it off about 10 years ago. But I was also able to exercise then. For awhile my eating habits also regressed, but since learning I have a precancerous condition in my esophagus I'm back on the straight and narrow! I have taken off a few pounds, but still feel some water retention that I think is partly due to medications.

My challenge now is finding a PM doctor, since my neurosurgeon had been prescribing for me for 2 years and they are now saying I need to find a PM doctor. But I have very limited insurance, and the one local PM who does prescribe medications won't take it. As far as long acting (ER - extended release) medications versus IR (instant release - short acting) most people do start out on short acting, but if you have a long term condition that's not going to improve and a halfway decent PM doctor you should be able to get longer acting formulations. But here in the states most PCP's (primary care docs) and even other specialists do not want to prescribe narcotics, period. That's what I've run into. I can get all but one of my medications from other doctors, but the one medication, the percocet, is the one I can't find anyone to prescribe. I have one more script left, and my cousin who lives in a nearby city thinks she knows someone who may help. I'm working on making that connection.

It isn't easy in most places. I don't know how it will be for you, but it will be interesting to hear your experiences.

straydog said...Hi Punchfit, I too would like to welcome you to HW although I am a little late in doing so. I am so glad you found us but very sorry to see another person come along with CP. From reading your post you have had more than our fair share of suffering, a lot of it it needlessly, that's so sad. You were terribly young to start down this road. Under treated pain should be made a criminal offense because its just rampant.

No dr should ever question a patient when the patient is simply stating "I want some quality life". If it was only that easy. I was glad to see that you did advocate for care from your dr. Many of us are having to do this more and more. You are entitled to that.

As some has said you should try to find a pain mgt dr to handle your pain. You have not and most likely in the future will not receive the kind of pain mgt care you will need as time goes on with the dr you have now. Your dr is too concerned with issues down the road and not concerned with taking care of the immediate problem. You need to be able to function and take care of your family. CP takes a lot away from us but there are ways to keep some aspects of our life intact.

Drug addiction in the US makes it hard for many of us to get good medical care. The drug seekers has really ruined for us that need certain medications to function. No one likes to take medication but sometimes it is a way to survive. There is a big, big difference between addiction and tolerance issues. We can become tolerant to our pain medications just like we can become tolerant to diabetes medicine, blood pressure medication, antibiotics and such. Sometimes we may need higher doses or even need to change to something totally different. Many do not understand this, they choose to stick their heads in the sand. The best thing you can do is educate yourself on CP and the medications used to treat it. It can be scarey but all medications have possible side effects, but it does not mean it will happen to you.

You had asked about using heat or cold methods. That is something to try for yourself to see which one works the best. For me heat works best, cold makes it worse. Moist heat is much better than dry heat too. Take care and please keep posting, I think you found out you are not alone.

Hello straydog,

Thankyou for your warm welcome, i am so glad i have found you all, its made a really difference to me psycologically, i dont feel as alone, thankyou to all of your responces , your time is greatly appreciated as we all suffer from CP to one extent or another. Your spot on i have suffered this pain needlessly, and i am not taking it anymore, enough is enough.

I am a strong advocate, but no so good for myself, not sure why.

I have 4 children and my eldest a son has a disability i started a support & advocacy group years ago, and really made some changes to service providers and assisted many people in obtaining supports that they were entitled to, i was unable to continue my role and others have taken off from where i left of, but for some strange reason i dont have strong advocating skills for myself, i think my anxiety, age and circumstances have got the better of me? who knows.

Staydog, you have hit the nail on the head my Dr seems to be more concerned about issues down the road with meds, i am too but when you are in so much pain, you really dont have a choice, especially when you have tried other alternative therapies, such at PT etc... and they have not made a good enough difference.

So true, drug addicts also here have destroyed it all for the people who suffer real chronic pain ,i have become tolerent to codeine, but was on this for many many years, and my dr seems to want me to stay where im at, rather than understanding that the pain has worsen dramatically, and support me in obtain a better quality of life, he also was concerned with my age, stating "your to young to start taking strong narcotic meds such as Norspan" I am 40 years of age, but it shouldnt matter what age you are if the pain is real and PM is required, so be it. I do not have a history of drug abuse or any kind of an addiction, so i dont understand his comments and thoughts, maybe because he doesnt know me well enough, as my long term Dr left the local clinic, i have only been seeing this Dr for 4 months.

P Therapy used to recommend cold water, like a pool or beach but i found the extreme cold water to be painful personally, i need to find a good effective heat bag, will have to do some research as i dont want to purchase a low quality item that is unhelpful.

Thankyou for your great responce and info and thoughts, i have definatley realised that i am not alone, its so good to talk with you all, and i will keep reading through the posts, its a wonderful forum.

Good evening *hugg* it is good to hear from you again. I hope you are able to rest a little bit tonight. I hope your MRI shows it hasnt increased too drastically. More than that I hope you and your doctor can find a way to effectivly treat your pain.

I have levoscoliosis of unknown origin. (so far) It began a few years ago at age 26 - 27. They seem concerned that it started "late in life". about a year ago at age 28 I began showing levoscoliosisto my spine (other areas of my body aswell)

and already progressing curve. Its hard to acknowlage that I am only 5ft 5in now, when I used to be nearly 5ft 9in just a few years ago, yikes!!! I am not a candidate for surgery... any type of surgery for that matter, that isnt of urgent need to my health, until they can find a "cause (s)" of my health problems.

I used to be part of scoliosis association forum, but it seemed there was constant "fighting" over the bracing vs. surgery debate. Also, there went nealry as many people over there as there is here. Once I came here to Healing Well, I never looked back! Hehe

Oh! Before I forget, yes!!! I get the "hot pain". It feels like extreme "sting" sensation with loss of feeling / numb in the limbs?? If so, they allow me to have "steroid injection series" to realieve that pain and inflammation. It is a temporary fix, but the only one I have available to me right now. Perhaps you might want to inquire about it.

And to answer you question about "coping" ...I began to cope with it all by "re defining" me. I saw a pain psychologist for a very long time. She taught me the mechanics of pain to ~~> Cognative behavioural therapy ~~> Biofeedback. I wouldnt be the "me" I am today without her help.

Sorry the post is so long I have a habbit of getting a little too chatty! Hope you have a great evening

*huggs*

dani

Good day Dani!,

Nice to hear from you, and thankyou for your warm caring words, i to do hope that it all pans out, the patch was supposed to start to be effective as from today, but so far no relief. I am feeling frustrated i must say, but am trying to cope as best i can, today the pain was terrible themn eased off in the arfternoon, but is always there just more intense pain different times of the day. I will have to do some research as i am not familiar with levoscoliosis.

I do hope you find the cause of your conditionm this must be frustrating not knowing why or how this has occured, what is yout outlook in relation to your curve progressing, I have never measured my height, your height has drastically been effective. I am 5ft "11", i should start to track this over the next couple of year to see if i have so called shrunk.

I hope you are on the right track with PM to eliviate some pain, we all deseve a quailty of life, its seems so unfair and such a battle to get it right, or get a great pm specialist, supports etc,,, what most we require to be able to live a quality life either pain free or minamal pain .

My stinging pain is in my lower back and feels hot and numb, but does not effect my legs, so this will need to be checkout to see what is the casuse, i also get pain in the middle lefthand side of my back and under my ribs also head and neck pain, feels like i am carying a steel metal pipe for hours on my shoulders, a constant extremley heavy pain.

Thanks so much for the great links will check them out, much appreciate, im sure the info will be of great value.

Alady said...Punchfit,Thank you for your kind words. Unfortunately, the injections never helped me much either, but I've not heard of weight gain from them. But various medications can cause weight gain, but not all. I know I've gained about 20 lbs. since my surgery and I had worked to take and keep it off about 10 years ago. But I was also able to exercise then. For awhile my eating habits also regressed, but since learning I have a precancerous condition in my esophagus I'm back on the straight and narrow! I have taken off a few pounds, but still feel some water retention that I think is partly due to medications.

My challenge now is finding a PM doctor, since my neurosurgeon had been prescribing for me for 2 years and they are now saying I need to find a PM doctor. But I have very limited insurance, and the one local PM who does prescribe medications won't take it. As far as long acting (ER - extended release) medications versus IR (instant release - short acting) most people do start out on short acting, but if you have a long term condition that's not going to improve and a halfway decent PM doctor you should be able to get longer acting formulations. But here in the states most PCP's (primary care docs) and even other specialists do not want to prescribe narcotics, period. That's what I've run into. I can get all but one of my medications from other doctors, but the one medication, the PaLadyt, is the one I can't find anyone to prescribe. I have one more script left, and my cousin who lives in a nearby city thinks she knows someone who may help. I'm working on making that connection.

It isn't easy in most places. I don't know how it will be for you, but it will be interesting to hear your experiences.

Glad you're staying with us!

PaLady

Hello again PaLady,

I am so very sorry to hear how difficult it is for you.

We can see most specialist here in Australia without having insurance, we have health care plan that is tailored to the individual in need, which entitles them to 8 visist, then the dr or specialist will contact your Dr and request another 8, so its as long as its needed this can go on and and until you have resolved your health issues, all goverment funded, this covers dental, orthopediac surgeon, Specialists .

Dr here are the same, my prevoius dr was great and supported me while she was here, she uesd to give me options of different meds, but i was scared to try some of them due to the info i obtainined, and bascially put up with the pain, now that i need he for PM she has now moved on grrrrr. Here if you are a low income earner-unemployed -pensioner- have a disability-or chronic diesease and many other conditions, you are entitled to all free treatmentsincluding surgery and ambulance . Medications are quater the cosT SO IF A MEDS script WAS $25.00 with the card you pay $5.20.

If your well off you pay big dollars, if you work fulltime you have to pay for insurance, full med prices, ambulance cover.

\What is the reason you cannot get this particular med? what is its main ingredieant?

if it has made a real difference fro you , i do hope you can obtain it with the help of your cousin, but it shouldnt be like this, we all have enought difficult days let alone taking on other challengess chasing medications from other doctors in diffent cities, but this is what happens when you need them to improve your quality of life, i do hope you cab get some more scripts, good luck

For some reason dr seem more connfident to prescribe,mogadon,oxycontin,demerol,ms oxycontin, morphine many more to senior citiznes? i wonder why this is?

Glad to speak to you tonight,

Please excuse all my spelling errors as i type to fast and not to go when i am half asleep on the pc.

*huggs* I am sorry the patches arnt quite cutting it. I had hoped they would provde you with more relief. When do you see your pain management doctor again? Gosh, I hope soon. I know you mentioned his reluctance to even perscribe the patches, but you need help. In my opinion you have been in very severe pain for far too long!!! I am hoping that the MRI will provide more answers and more treatment options... did you mention when you were going to have it done? I have horrible memory at times.

"Levo" means left. So levoscoliosis means convexity to the "left". wait.. i bet there is a breif description somewhere, lemme find it..

The condition can be categorized based on convexity, or curvature of the spinal column, with relation to the central axis:

Rotoscoliosis (may be used in conjunction with dextroscoliosis and levoscoliosis, e.g. levorotoscoliosis) refers to scoliosis on which the rotation of the vertebrae is particularly pronounced, or is used simply to draw attention to the fact that scoliosis is a complex 3 dimensional problem.

Don't worry about my curve. I hear degeneration is rare in someone so young (or for curvature this "late in life"). The degeneration (which is causing a more rapid progression) is from a couple of sources, the inital curvature itself and applicable causes is still being assessed. I have a very nice group of men working very hard to help me. They keep me very comfortable, physically and emotionally, while their "investigations" proceed. Spine specialist, Endocrine Specialist, Disease specialist, etc.. And a couple of surgeons doing minor, but somewhat urgent, fixes to other areas of my body.. eyes, teeth, etc. I know it "sounds" bad, but really they take very good care of me.

The hight loss is also part of the "degeneration" for me. And "normal" or "expected" for what is going on. Hopefully, your doctor measures you regurlarly. I am sure they do. The MRI should really help with giving you treatment options for you pain (I hope!!!).

Don't worry about my pain or progression atall! Really, they take very good care of me, also, I seem to adapt rather well. I do not know if it is my age (29) , or what... For instance, I will be thrown for a loop with a new level of pain, then after a few weeks, I will adapt to the pain and it isnt so..pressing. I seem to do it with other things too. Like my hands, they get very hott, swollen and tender. But I still need to write, ect... So I can now write legibly with my left hand. Kinda odd.

Yes!! Winter, I loooove winter. I live in a "high altitude desert", so I actually get alot of snow! I love it! My daughters have so much fun when it snows! How hott is it out where you are?

...oops. I see this post is getting very long again. Must be the good company! *hugg*

*huggs*

dani

Two roads diverged in a yellow wood,And sorry I could not travel bothAnd be one traveler, long I stood

Thanks for asking, had my x-rays today, back to the Dr in the arvo to compare my last lot of x-rays that were taken 6 years ago.They are looking to see if the curve has worsen and if there are any other structual damage.Something is not right, the pain has increased dramatically.It doesnt seem to make sence as i have lost alot of weight, became more active, did a gentle modified strength training program as suggested by my PT, and the pain has just got worse.Patches havent kicked in yet , so i am very dissapointed and frustrated as i was really hoping and was excited thinking finally i was getting some relief.I will re-visit this tommorow with my Dr.

I am sorry to hear your pain has also worsen, i really hope you can sort it out, you deserve a pain free quality life.Can you pin point why your pain managment has decreased?Or has it just suddenly got worse out of the blue?I have read some of your other posts you sound like a creative young lady.Are you able to guide me on how to get my details up when you click into my user name such as email etc... i cant seem to work it out?That way i can recieve emails and get to know some of you wonderful people on another level.

Does NZ get the TV Current Affair?While i was sitting writing this email, the show came on and they had a story on PM-Chronic Pain,Well my eyes and ears were all there.Apparently there is a revolutinary pain managemt now available, that is working wonders for alot of people who have decided to give it ago, its called LOW LEVEL LASER, there is no burning, no scars no heat no rash, so they claim.It works by blocking nerves, can be used on severe neck & back pain and other muscular areas They said it works buy blocking nerves,30 % people it doesnt seem to help, but the patient who had the neck pain, said that it relieved her pain emensly, as she was a student and suffered severe neck pain and headaches, They said that pain decrease varies from person to person some over 50 % how nice would that be a miracle come true!The treatment costs $60.00 each visit/treatment and you need to go on a regualr basis.I wonder how true it all is, but then again who knows i am not in the position to say?

Hope you to are having a relatively pain free dayKeep in touch and let us know how you go in regards to seeking additional PM.Have a nice day